I received my biopsy results yesterday. They showed portal inflammation a large granuloma and bile duct damage. They have been unable to put a name to what is happening with my liver. They have mentioned possible Primary biliary cholangitis because of the bile duct damage but all features are not present. They also mention the possibility of sarcoidosis because of the granuloma. I am now waiting to see my consultant and hoping that he now knows where to go with this. I feel kind of relieved that the biopsy confirms that something is wrong but very disappointed that despite having a liver biopsy, I still do not have a diagnosis. I would be grateful to hear of any similar experiences. I hope you are all as well as can be expected.
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Millie2014
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Hi Millie, I had portal vein damage and also portal vein thrombosis but my condition was NASH then cirrhosis and HCC. I don't know about PBC or sarcoidosis so hopefully someone will answer you soon who is knowledgeable on those subjects. I hope that you get a proper diagnosis soon. Very best wishes. Alf
Thank you for responding. I am also hopeful that someone may be able to throw some light on this for me xx
Hi Millie. So sorry they havent been able to come up with a diagnosis as yet but hopefully they will soon and be able to treat the problems. Try not to worry, easier said than done I know, just keep smiling lovely lady.
I'm sorry you aren't sorted yet, I hope you get sorted very soon. I've got Nash with fibrosis caused by meds from drs, I have other conditions too which I'm sure you do too. Sending lots of healing hugs your way. Lynne. Xxxx
Hi Millie I was diagnosed with PBC in Feb after a biopsy. I’m still trying to get to grips with all the side affects that go with it. Initially I had lymph nodes raised in my neck which they thought was cancer. After 3 nodes where removed they found they were benign. Apparently PBC caused this. So I can empathise with your feeling bewildered. I’m sure they will get to the bottom of it. I think the waiting is the worst part. No matter how hard you try to stay positive, you’re human and you will worry. That’s only to be expected.
Please let them diagnose it and try to stay positive until there’s an answer for you.
I’ve got a big shoulder if you wish to chat or rant, sending hugs. Jane xx
Thank you for your very supportive message Jane. I have been waiting for a diagnosis since 2005 and finally thought the biopsy would reveal all but its obviously not as simple as that. I will just have to accept that and wait a little longer.
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